Go Fish

Do you have a surgery date?
No. Go fish.

After talking with AJ's audi today, I was informed that the surgery scheduler is out of the office today. Fantastic. Insert, another oh so fabulous "You've GOT to be kidding me." We won't know AJ's surgery date until after the weekend.

I was also informed that usually it takes about a week after insurance authorization to schedule surgery. Well, whada ya know. That would have been nice to know months ago. We just kept hearing the surgery scheduler will call you once he's been approved. If I had known it would take I week, I wouldn't have been so quick to contact her and ask what in blazes was going on.

In other news...
AJ begins toddler group at the Center for the Deaf & Hard of Hearing on Monday. I haven't really had a chance to think about it with all his CI stuff going on. He'll be attending the toddler group Mondays and Wednesdays from 9-11:15am. We were able to successfully reschedule his OT and Feeding Therapy to allow for this opportunity. Parents are required to stay during the group and are "involved" at the beginning and end of group. We are so excited that he will have a chance to be around his peers. He needs this so badly. Perhaps I won't feel so guilty then that he never has a chance to play with other kiddos. When you've got a schedule as full as his, there doesn't leave time for much else. I will be sure to post pictures of our little man "at school" next week.

Thank you to everyone for all of your prayers and concern. While all of this hoopla has been going on with AJ's CIs, my grandma has been in the hospital. It has been a stressful time for all of us. She is doing well and will be moved to a rehab facility for a week on Monday. She is sad that we are not able to bring AJ to the hospital, but she gets her daily dose of AJ updates and has his picture displayed proudly on her bedside table.

We've got a busy weekend ahead of us, so I thought I'd post some recent pictures of AJ now...enjoy!

Hard at work pulling pegs out during OT


Who needs toys when you've got an oatmeal container & shower curtain?


Yoga Boy-Down Dog Position


Move Mom, your in my way...

Tick Tick, Tock Tock

More phone calls were made and received on Monday and Tuesday, after I posted on the blog.

-A copy of AJ's Medicaid approval was sent to our CI Program at 10am on Tuesday morning.

-Our case is opening the door for many more kiddos. Apparently, there was a major miscommunication, or just plain lack of communication, between Medicaid and the facilities involved (Froedtert/MCW). The legislative liasion thanked me for being so thorough in my letter and drawing attention to a larger issue at hand. Medicaid has sent out a Field Agent to the Otolaryngology Department, which apparently did not have access to the new computer system implemented in November. We are hoping that this will take a lot of stress off of our CI insurance gal. She has spent countless hours working on our case, and many other kiddos cases. We do not want her efforts overlooked!!! I put the liasion in direct contact with her and between the two of them, and what was being told by Medicaid, not all the pieces of the puzzle were present.

-AJ's CI audi has been officially notified that AJ's implant has been approved and will be in touch soon to discuss device choice, activation, etc.

-Yesterday I called to find out why the surgery scheduler hadn't called me yet. I finally got in contact with her. She is currently coordinating everyone for AJ's surgery...and we "should" have a date TODAY. She did share when our surgeon's next available date is, which happens to be the date she is shooting for. We will not share until we know a date FOR SURE!

-Yesterday AJ's SLP was able to get him in with one of the NP in the ENT Clinic to check out his ears. We've had major head-banging and a decrease in liquid intake. Red flag, red flag! NO EAR INFECTIONS. WHEW. Just lots of gooey wax. She removed it and attributed the rest of his symptoms to teething. While he was screaming during the wax removal I was able to get a good look into his mouth and saw some teeth coming in. Molars. Fun.

So, here we sit. I literally hear a clock in my head. Tick Tick, Tock Tock. Yesterday, I watched a sequential bilateral cochlear implant surgery online. AWESOME!!! Click HERE to go to University Hospitals Case Medical Center Rainbow Babies & Children's Hospital website and watch the surgery. Amazing! If you ask my mom, I've always "wanted to know" what they are doing when it comes to medical things. While doctors were stitching up my head at age 6, the doctor had to explain to me what he was doing or I wouldn't sit still. :) Anyhow, knowing exactly what they'll be doing calms me. It wasn't gory either, I got a little squimish at first, but once they got in, it was awesome!

We'll keep everyone updated!

Cochlear Implant Q&A-Our 100th POST!

Now that we are entering the home stretch, lots of questions are popping up. So lets address them, shall we?

Q: Where will his surgery be?
A: Children's Hospital of Wisconsin, Milwaukee

Q: Is AJ receiving one or two implants?
A: AJ is receiving one implant. Our Cochlear Implant Program does not do simultaneous bilateral implants at this time.

Q: Which ear?
A: The right. We chose this side as it is his "stronger" side in regards to his cerebral palsy.

Q: How long is the surgery? Will he be put under?
A: His surgery will last 1.5 to 3 hours. Yes, he will be under general for the surgery. He'll spend the night at the hospital. They only allow one parents to stay, so Mommy will stay and Dad will be a phone call away.

Q: What will he look like after surgery?
A: A ninja :) He'll have a large gauze bandage (possibly a plastic cup) over his right ear. The bandage usually comes off within the first day or two. I have a feeling we will have to use the arm splints with him to keep him from touching his head.

Q: Will he hear right away? If not, when will he hear?
A: NO, AJ will not hear right away. The implant does not work unless the internal and external pieces are together. The external piece will not be put on or turned on until 3-4weeks after surgery. His incision needs time to heal.

Q: Where is the incision made and the internal device placed?
A: Usually, the incision is behind the ear, with the internal device just up slightly.

Q: Which implant company have you chosen to go with?
A: Med-El. We like the size and weight the most, since AJ is such a little guy. He'll be able to go to the BTE (behind the ear) set up right away, if not sooner than with the other brand we were considering. We also like the remote, the deeper insertion of electrodes, and the technology that will allow him to go down the slide and not screw up his processor. Those are just a few things.

Q: What happens after surgery?
A: He's given 3-4 weeks for his incision to heal. Then comes activation day. This is THE DAY AJ will hear for the first time. The external piece will be placed on his head and turned on. His audiologist will set up a beginning program. His implant will NOT be placed on full sound (if that makes sense). We'll have a program to turn him up a notch every day. To start with, she'll probably set them to where he hears with his hearing aids currently. Without aids, he's at 120db. With aids, I'd say 75-80db. Eventually he "should" be about hear 25db and above!!!
It takes kiddos some time to get used to sound when they've never had it before. Here is the speech banana. Check out what sounds you hear at which db! the banana shape with the "letters" inside shows at what db you hear those speech sounds...thats why its called speech banana. You can see that right now, at 120db, AJ hears nothing, except maybe a jet engine right next to his ears.




AJ will also begin intense speech therapy to help him listen, interpret the sounds he is hearing, and hopefully, learn speech. Because of his cerebral palsy, we do not know if he will develop speech. Simply a fact. Because he is still so vocal now, that is a good sign. We are very hopeful and think this kiddo will have lots to say when he can hear!

Q: Will you stop signing to him?
A: NO. We have chosen to continue sign language with AJ. We're choosing a sandwich approach between spoken language and sign.

Q: When does he have to take the external part off?
A: When he swims (although lots of parents have found ways to allow their kids to swim with a CI on!), takes a bath, and when he sleeps

Q: Will he no longer be deaf?
A: AJ will always be deaf. His cochlear implant will allow him to enter and participate in the hearing world, but it will not "cure" his deafness. Once he takes the coil off his head, he won't be able to hear. Eventually, I think he'll figure out how to slip his coil off "accidentally" and say, "Mom, I can't hear you." His version of selective hearing :)

Q: Is all this really worth it?
A: Beyond worth it. Period.

Q: WHAT WILL HE HEAR?
A: This is the most common question we get. It is unknown as to exactly what deaf children with a CI hear, because those of us with normal hearing, cannot hear what they hear. The only ones who are able to tell CI professionals how it sounds different are adults who had their hearing, lost it, and then regained it through use of a CI.

Another CI Mommy posted these links on her son's blog. Please click HERE to go to her blog. I can't figure out how to get the links to the sounds on our blog :)
In the paragraph after the picture of her son chewing a blanket you'll find the links as to how it will sound as AJ's implant sound levels are increased. Awesome!

Q: Will he wear his hearing aid in his left ear with the CI for his right ear?
A: This is called bimodal. NO, he will not. AJ receives very little, if any benefit from his hearing aids. This is because his hearing loss is so profound. What he gets from his aids now is, pretty much useless. We and his audiologist have decided to allow him to concentrate on what he'll be betting from the CI alone.

Q: Will he ever receive another implant?
A: This is called bilateral implants. YES. We hope to submit paperwork for a left CI soon after he is activated and we see how he is doing with his first CI. With his cerebral palsy, having bilateral CIs will allow him better balance, coordination, and most of all, he'll be able to detect which direction a sound is coming from. Awesome!

Q: Are you really ready for this?
A: YYYYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEEEEEEEESSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS

If we missed anything, please feel free to leave a comment and we will answer your questions...

APPROVED!!!! APPROVED!!!! APPROVED!!!!

I emailed our State Senator today...as a follow-up to the letter I had already sent.

By two in the afternoon I received a call from the senator's staff stating they had sent my email directly to their legislative liasion. She in turn contacted the appropriate people at Medicaid and said they need to get this done "now". The staff member told me that usuallys she does not call people back, she usually sends off an email since they receive a lot of these letters. She then told me that the legislative liasion had said it was one of the best, well-written letters she had ever received. We were to have an answer from Medicaid regarding AJ's case by noon on Monday (since it was already Friday afternoon). If we did not have an answer, I was instructed to immediately email this staff member and they would ___________
(you fill in the blank with your choice words!)

Wow! I was so excited. We were finally getting somewhere.

At 4:58pm, I received a call from the legislative liason herself. She stated she had just been informed that AJ's case received prior-authorization and provider has been informed.

WOWEE WOW WOW.

No, I didn't say "Wowee" to the legislative liason. :) She again told me that my letter was one of the best she's ever seen. Wow. (That I did say outloud). She asked me to call and verify that AJ's provider was informed. By the time we ended our conversation, it was after 5 pm. I left messages for the insurance gal and CI administrative assistant asking if they received the pre-auth.

By Monday, we should have a surgery date scheduled...and be well on our way to AJ entering the hearing world.

WOW.

19 and Holding

Yesterday was a very scary day.

AJ has not gained weight in the last six months. He weighed in at 19lbs 8oz in October 2008...and was the same yesterday. 19 lbs 8oz at 32 months old.

As I stood next to the scale AJ was on, with my camera ready, sure that he was at least 20lbs even, my heart sank, shock set in, and fear consumed me.

His GI doctor is very, very concerned. Last October, he created AJ his own personal growth chart (since he's nowhere near the US growth charts). He was at 86% for his weight vs. height. The GI had said that meant he was slightly malnutritioned, but that it was ok, we were doing all we could, and that once he bumped up to 90%, he'd be happier.

Yesterday, he was at 83%, 3% LOWER.

It is EXTREMELY scary when your child's doctor can't tell you what is going on and how to fix it. He ordered blood tests and said that we need to basically cut healthy foods out of his diet. Concentrate only calorie rich foods ONLY. We can give him a slice or two of banana, but not a whole one. Food that are hard to "beef up" with calories are out. We are expecting the blood test results today or tomorrow.

There are a "bazillion" reasons as to why this is happening (the GI's words not mine). We are basically on a fishing expedition to see why he's not gaining weight. He has already been tested for parasites, celiac disease, and abnormal calorie absorption (negative). The hardest part for our GI is not knowing when he was born. We were told 4-6 weeks early. After a few months at home and many specialist appointments, its estimated more like 8-10 weeks early. We will never know. We know that he is burning an insane amount of calories since he has CP and is so mobile now, but this kiddo eats A LOT of food when he eats. Where's it all going?

We have a weight check in 2 months. If he does not gain, he wants to put an NG tube down his nose to administer additional calories. Depending on the blood tests results, he may scope him (do an upper GI).

Noooooooooooooooooooooooooooooooooooooooooooooooo. This is not happening. Just when we thought we had gotten way from "tube talk". Yesterday was the first time I cried in front of one of AJ's specialists and his staff. Talk about embarrassing.

AJ's nutritionist came in. Based on her calculations AJ is receiving proper nutrients. She recommended getting a pestle & mortar or a pill crusher to dissolve AJ's complete vitamins into a finer powder than what I can achieve with a butter knife. Jeremy brought home a pill crusher from work last night. Note: Those gummy vitamins they sell for kids now ARE NOT the same as the regular vitamins. The Flinestones (or generic brand) are COMPLETE, the gummies are not.

I asked the nutritionist about foods rich in fiber and that will keep AJ regular. The reason I give him the fruits/veggies etc is mostly to keep him regular. When you are pumping a kid full of calories, some of it can stop them up. We went through a few types of foods and she gave me ideas as to how to "beef" them up with calories. She gave me a few handout on blended foods, high-calorie puddings, and a milk + _______ calorie chart. She also sent us home with a bag of samples. We have Duocal, which is calories in a powdered form. we can use this or oil (as we have been) to beef up foods with calories. She also gave us some different types of high-calories/nutritious drinks for kids (actually made by the maker's of Boost products) and some new flavors of our good 'ol favorite...PEDIASURE.

We left the office and headed down to the lab for AJ's bloodwork. 45 minutes later, I left with a very crabby, hungry little boy.

I'm keeping a log AJ's input/output/total daily liquid intake/total daily calories/wet diapers/soiled diapers.

This morning he ate beautifully at feeding therapy. He chugged, and I mean chugged down the "Banana Cream" Pediasure. I forgot how that stuff smells-ick. But he liked it, so my issues with its smell are null and void. I had to look at my calendar...AJ's been "off" pediasure for over a year now. We had gone to the cheaper alternative (pediasure= $12 for 6 bottles...he was drinking 4/day) Carnation Instant Breakfast with whole milk. He liked the banana cream, he had the vanilla for lunch and has an orange cream to try as well. Whatever WORKS.

His SLP brought up something interesting regarding the NG tube. AJ is such a sensory kid, good luck keeping that in his nose and throat. Will it make him take a step backwards in sensory world? Her other fear is that he will develop an aversion to the tube, and due to that, will develop more aversions to other things. Ugh! I hadn't thought of that. We and his SLP decided that we would cut back his feeding therapy to twice a month...and switch days to accomodate him particpating in the toddler group (more info in a different post). Looks like we made that decision at the right time. Finding an even balance between gaining weight for GI, continuous movement for PT, and trying new foods/biting for feeding therapy feels impossible.

We're a bit calmer today. Maybe its just that he ate well today. His nutritionist did ask me for a recipe that was Jeremy's Grandma's. She had no idea what "Russian Fluff" was when she saw it on AJ's food log. When I shared the ingredients with her, she asked for the recipe, hoping to share it with other families who are looking for "meal" ideas that have bold flavor and lots of calories. I think thats a neat way of Grandma Schmidt feeding other kiddos, in spirit :) I'm hoping to get Uncle Jason over here soon to help convert our hall coat closet into a pantry with shelves etc. I keep AJ's special foods/snacks/supplies in one section of our cabinets. That worked well when he was a baby and ate baby food. Not so much now. Note for the next house: pantry.

Transitions...

Today, AJ's SLP and I discussed what our ultimate goal is for AJ in feeding therapy. We placed his current "age" in regards to feeding at around 12 months. Think of a typical 1 year old she said. Is he eating like a typical 1 year old? Ok, I can't think of how a typical 1 year old eats...due to training my brain to not think about what other "normal" children are doing and when they are doing it.

Ultimately, our goal is to have him eating at the level of his chronological age-32 months. We need to get him chewing and biting foods consistently. He needs to have better control of the sippy cup or a regular cup. He needs to move his food from side to side in his mouth and chew to create a bolus to swallow.

I wanted to touch base with his SLP because all of a sudden I had two thoughts:

1)How on earth are we going to fit 7+ sessions of therapy in per week post-implant?

2)Duh. He won't need feeding therapy forever...so when will he be discharged?

I found myself so wrapped up in his current schedule, I didn't stop to think that maybe he may not need feeding therapy, or at least not as often, post-implant. I also wanted to know what his therapy schedule would be like if we choose to go to Children's for his speech therapy post-implant. As I suspected...they would like him to have speech 3x week. Often insurance won't cover 3x week, but we'd shoot for as much as possible. In addition, it will also require us to do lots of therapy at home with him. His SLP said that maybe at that point, if AJ was not discharged from feeding therapy yet, we'd cut down to maybe twice a month.

Our other option is to have AJ receive speech therapy from CDHH. Their approach is more parent-centered. He would have therapy once, maybe twice per week, of course with lots of work on our part at home. I keep saying that we need to make this decision, and we really do. SOON.

AJ's transition meeting with Bto3, our school district representative, and his therapy team will be on St. Patty's Day, 3/17. At this meeting we will voice our wants, needs, etc. for AJ and what our ultimate goal is for him at this point. The school district will explain our options, what is available, etc., and his therapy team will give mini reports on his services/gains. Following the transition meeting, evaluations will be done by the school district staff and an IEP will be schduled. That is THE meeting that is most important.

We need to figure out what we will do with the gap between AJ's birthday (6/28) and the beginning of the school year September. As a child who will be newly implanted, skipping therapy for a few months is-NOT GOING TO HAPPEN. We must also figure out what the school district is willing to provide as far as PT and OT. Will he need additional PT and OT outside of school?

On Saturday, our weather was ridiculous. It was 50 some degrees out! My mom came out, we spent some time outside, and then took a drive...to AJ's school. I wanted to show her where it was and drive around the area a bit. For those who live in WI, I didn't get lost in Waukesha-YET! The words "This is AJ's school" sounded absolutely foreign coming out of my mouth. We drove back just in time for naptime. When I put AJ in his toddler bed, it dawned on me he had been in it for a week already. A transition I was afraid of and never thought would happen...did...and was now old hat.

Transitions can be positive, even if they are a bit scary.

Day 60

Beware: I have an odd sense of humor today....

Hm. I am totally convinced that our state insurance works with the Guatemalan government. They seem to be on the same time schedule....

Would it surprise you that I have already contacted our CI program insurance gal to "remind" her that today is Day 60? :) While I can't, she can call the state and find out what's going on with his case approval being delayed. So help me if they tell us we've been sitting on someone's desk for months approved, but not moved,(happened with AJ's adoption), I'm gonna scream, have a drink, and then freakin' laugh.

I am constantly reminded that the state implemented a new comptuer system, and that they've been slow in general. That's all fine and bananas, but I really don't care :) How's that for blunt? I think (and forgive my soapbox here) that we have been all too patient up to this point. So, I'm sorta done with the whole, "let's wait and see gig." The poor CI gal is going to be so sick of me. Oh well. If it gets AJ what needs, then fine. Don't mess with Mama Bear today! Grrrrrrrrrrr.

On the homefront, AJ had his 6 month follow-up with his CP doctor. His PT always comes with us to the appointments. It seems that my kiddo likes to live on the edge. When he walks barefoot, he has a very wide base (walks with legs far apart) and feet in. When he wears his shoes and SMO's, he struggles to walk and scissors (sort of crosses feet while walking). These two issues are one in the same. When he walks w/out shoes, he's doing it the easy way. When he's walking with shoes, it makes it more difficult because they keep his feet in proper alignment. He's using his adduction a bit too much and his PT was concerned as to whether or not it was time for botox or some other treatment. We all discussed and all agreed to watch and see what he does, with another follow-up in 6 months. He's right on the 'edge' of, we could do this or that, or we could wait and see what he does. We considered a TheraTog, additional taping, and the botox. We all agreed that if we give him some "help", he'll take advantage of it and use it as a crutch.

His CP doc was very impressed that he was walking and stood up on the exam table all on his own. He was NOT doing these things 6 months ago when we initially saw her. Tip: if your child is being asked to walk and show off his or her skills and doesn't seem to be cooperating, just open the exam room door. He was GONE! She was quick to tell me that yes he is a bit floppy still, and flexible, but flexible is a good thing. It is easier to help muscles that will move than muscles that won't. She was a bit surprised and dare I say upset that he hadn't had his surgeries (ear or eyes) yet. She encouraged me to push both as much as we could. (Insert smile and nod from Mom-enough said). She is sure his balance issues are in part to his hearing loss and that his depth perception is not great due to his eyes.... I wonder if we went and got a Mr. PotatoHead if those parts would just fit on AJ? :)

AJ fell alseep on the way home from that visit and took a very long nap once we got home. Although he is feeling better, and thinks he's king of the mountain, he's still sick and it wore him out. During bedtime last night we had our first round of: Mommy puts me to bed, I get out of bed (or kneel at the foot of my bed) and close my door all the way, then get out of bed and play on floor. Mommy puts me back bed. Repeat 10x. If he could talk, I swear he'd come up with some hilarious comment where I'd have to put on the "stern" Mommy face and not laugh. Something like, "Mom, this is more fun than playing Twister!" Groan.

Come 'on Day 60! Show me the approval!!

I'm A Big Kid Now

All day long that little jingle has been in my head. We took down AJ's crib today and put him in his toddler bed. We found an adorable sports themed bedding set. Naturally, I had to put that on his bed... and take a picture. I know it will never be that neat ever again!! AJ did very well when we introduced him to his new bed. He figured out how to stand up on it very quickly. (Insert Mommy letting out a screech with her inside voice). Much to our amazement, he took his first nap in his new bed-just fine. Out like a light. We are hoping he sleeps just as well tonight. We are a little worried about him falling off/down onto our hardwood floors, but that is to be expected with having a little boy. We have pillows on the floor just in case :) (Pics below)

**On a side note: AJ is feeling much better. Amoxicillin is a wonderful thing. Mommy is feeling better as well. I didn't realize just how sick I am. What an awful feeing to be stuck in bed (I negotiated couch time here and there!)
A HUGE THANK YOU TO DADDY for rescheduling his Saturday patients and staying home to take care of his home "patients" for the last two days!

Last Hurrah In My Crib

Daddy taking the crib apart

New Bedding

Rocky making sure the bed is "OK" for AJ

Check me OUT!

I can get down all by myself

1st nap in my new bed